RareBoost and IBG-Rare Met with Deniz Yilmaz Atakay, Head of the Rare Diseases Federation
On October 8, 2024, RareBoost and IBG-Rare hosted Deniz Yilmaz Atakay, Head of the Rare Diseases Federation, for a productive meeting centered around improving support and awareness for rare disease patients in Turkey.
Ms. Atakay shared her personal journey, which began when her daughter was diagnosed with phenylketonuria (PKU) in 2001. Struggling to find accurate information and adequate support, she embarked on finding international resources, ultimately founding the PKU Association in 2005. In 2018, she played a key role in establishing the Rare Diseases Network with 9 associations, and in 2024, the Rare Diseases Federation was launched in Istanbul to provide support for those living with rare conditions.
Ms. Atakay detailed the key objectives of the Rare Diseases Federation as following:
- Increasing cooperation with national and international stakeholders
- Gathering rare disease patients in Turkey under one roof
- Advocate for the best interests of patients and their families in studies
- Create a platform for counseling and solidarity for rare disease patients who do not have an association dedicated to their condition
- Taking an active role in legal regulations affecting rare disease patients.
Ms. Atakay also explained the establishment of the Rare Diseases Federation in Turkey and its mission in an interview, published on the RareBoost’s Youtube channel.
The discussion focused on mobilizing community leaders and creating educational content to raise awareness about rare diseases. Notably, a YouTube channel dedicated to rare disease education was proposed, with IBG-Rare offering to support content development. The meeting also emphasized the importance of incorporating rare disease topics into the national curriculum for young people and exploring collaborations with media platforms to reach a broader audience.
We are looking forward to working with the Rare Diseases Federation to create impactful solutions, raise awareness, and improve the lives of rare disease patients across Turkey and beyond.
